Janelle Shannon Lcsw

Janelle Shannon Lcsw
Janelle Shannon Lcsw
Coventry, RI United States
Stuff About Me:

Our story begins with adopting seven children, however William, Domonique, and Victoria (siblings)  All three had many unexplained problems. We saw many doctors and not one could give us a real diagnosis. We left each time feeling hopeless and more alone. We have had every service we can imagine from home services to community services helping us to work with these children.

After many years of fighting for a reason why the kids fell down all the time, bruised so easily, bled so bad that you nearly rushed them to hospital, cried all the time, could move there bones out of their sockets, had so many issues with executive thinking etc.... WE FINALLY met a psychiatrist at Gateway Healthcare Inc. who after awhile realized that they had to share a genetic disorder. He referred us to a geneticist at Rhode Island Hopsital.

We saw her and was given a diagnosis. We were told Ehlers-Danlos Syndrome Hyphermobility Type. Took less than 30 minutes and we were given no information about the disorder. I left feeling relieved to have finally a name but terrified of what it was and what I would learn and what to do. 

Over the next few weeks I researched and researched and found very little. I found the Ehlers-Danlos Network who was very helpful and but then I began to become scared. I started to find all the information and realized my kids were in serious trouble. Our pediatrician at the time wouldn't recognize the diagnosis, in-fact non of the doctors would and I couldn't find any in our state that had a clue what it even was. 

Today our three kids are struggling more than ever, they have good days, bad days, and horrible days. The days that are good consist of being careful, no sports, always taking it easy, no running, never walking long distances, no horse-play, etc. The bad days consists of using the wheel chairs all day, using the cane, or using the walkers and partially in bed. Then the horrible days can consist of being in bad all day, nothing helps to ease the pain, to get rid of a migraine, to relieve the fatigue, or even being in the hospital. 

Rhode Island has very few EDS specialists and most of them only see adults. The ones we have we see. Otherwise we must travel to Massachusetts. This is a work in progress. We will not stop fighting to educate doctors and help them understand the value in learning about EDS. 

Our promise to our children is to never give up, and to give our children the life they deserve and to show them they can be anything they want to be!  It is our hope that through our fight and everyone's good will that our children and others will learn that there is nothing they cannot overcome. 


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Janelle Shannon Lcsw's Fundraisers

Siblings Fighting Rare Syndrome! Image

Siblings Fighting Rare Syndr…

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